Giving Tuesday Thanks


We are so grateful to all the Batten families and supporters who created fundraisers on our Facebook page or made donations on #GivingTuesday! We made close to $15,000 and anticipate receiving matching of up to $1000 for each fundraiser thanks to Facebook and the Bill & Melinda Gates Foundation! Facebook fundraisers are an easy way to support BBDF’s research efforts and to help fund the treatment that is now in sight for juvenile Batten disease! You can create a fundraiser at any time and for any reason — maybe in honor of your birthday or another holiday, or simply just because! Just go to our Facebook page and click on “fundraisers” on the left side of the page. It will walk you through the steps. It’s very easy! Thanks again to all who made this #GivingTuesday so successful for Beyond Batten Disease Foundation!

Inspiring Family Takes on Philadephia Marathon

Seven-year-old Garrett was diagnosed with Batten disease at the age of four. In dealing with his blindness and inability to walk independently, his family found the importance of wellness of both body and mind. They have also come into contact with many other families who face similar challenges and would love to exercise and enjoy the outdoors with their loved ones. Through this, Garrett the Grand Wellness has evolved. Read the full press release on their attendance at the marathon here.

Screen Shot 2017-11-27 at 2.47.57 PM